It has been almost two years since I have posted on this blog. I haven’t had much to say. My job isn’t really that terribly interesting. I do telephone triage for hospice, which means I take calls from patients and families and help them over the phone with all kinds of issues.

Not Nurse Ratched has also found her way to hospice, albeit as a case manager that actually goes out and spends time with patients. She recently wrote a post about a process at the end of life we call actively dying. If you’ve ever wanted to know what goes on with a person’s body while they are close to death, that’s a great post to read. That post inspired me to write this post.

And this post is about “transitioning.” If you’ve been in nursing or medical school, you’ve learned the word “transition” as it relates to having a baby. The stages while you’re in labor are early labor, active labor, then transition, then you have a baby. These are somewhat reversed for someone who is dying. “Transition” comes first, then the person enters the stage that we call “actively dying.” I certainly had some confusion when first starting out and hearing that a patient was transitioning. I immediately thought of the stages of labor.

Some interesting things happen during transition. This is around the time that they may stop eating or drinking. As Not Ratched indicated, the body’s muscles are starting to fail. The person may no longer be hungry or thirsty. This is incredibly distressing for loved ones. It is a clear indication that the person is not going to be alive much longer and cuts through even the most stubborn denial. I get many calls for “mom stopped eating and drinking… won’t she starve?” At this point, giving food or drink to someone who is dying can actually have detrimental effects. Digestion is slowing way down; food will just sit in the stomach and cause nausea. The kidneys are no longer functioning well; if you give the person fluid it often ends up in the lungs causing breathing difficulties. Or it can end up in their arms and legs as edema/swelling – also not comfortable. Some well-meaning loved ones try to give food and fluid anyway, even if the patient is barely conscious. The patient cannot swallow well (if at all), so they end up aspirating it into their lungs, which causes infections and breathing difficulties.

Not only are the body’s muscles failing – the brain is failing, too. Often a patient in transition will become agitated, want to change position frequently or will pick at their clothes and bedding, or try to get out of bed even though they no longer have the ability to do so, resulting in falls or injuries. This is also a distressing time for families, not to mention exhausting. It’s difficult to watch someone be uncomfortable and not be able to do much about it. Towards the end of the transition period as they start the active phase of dying, the brain’s ability to regulate the body’s temperature fails. Often people close to death have fevers for seemingly no reason, with no signs of infection. When I start getting calls about a patient having a high temperature, I know the end is getting pretty close.

The most interesting part of transitioning, (for me) is when the patient starts talking about – and to – those who have died. Sometimes the patient talks to those who have died before as though they are sitting right next to them. They may start referring to transportation: asking loved ones if they have their ticket, telling them they have to pack, that they are about to take a trip and need everything to be ready. I’ll get calls where the family will say, “he’s talking nonsense, something about getting a bus ticket and his suitcase so he can go meet his wife. His wife has been dead for 10 years, why would she be at the bus station?”

The final part I’ll talk out in transition is also the most difficult for some people to understand. So I’ll tell a little story: When I was in high school, I worked as a CNA in a skilled nursing unit located in a hospital. There was a patient there who was being treated for cancer. We’ll call him Ray. I was responsible for taking care of him, so I’d feed him dinner and chat with him. At first he’d eat almost everything on the tray and very much enjoyed talking. Over time, each weekend I’d go in and he’d be eating a little less, talking a little less – until it became clear even to me as a naive teenager that he was dying. Towards the end he was eating nothing, sleeping or laying in bed staring off into space, no longer interested in talking. We did our best to make him as comfortable as possible. I was sure by the next weekend that I worked he would be gone.

The next weekend came and I went to work as usual, and was assigned to Ray. Thinking surely he was close to death I walked in his room and he was awake and sitting up. I asked him if he was hungry and he actually ate food from his tray! He was as chatty as ever. I was really confused. I thought he was getting better! A couple of days later he was dead. I asked the nurses about why he seemed so much better and they said it was something that sometimes happens to people who are dying – sometimes they rally, have a lot of energy, are awake and talking to their family and friends, even eat and drink. By the next day they are back to the work of dying.

So those calls I take might be the worst – the ones where the family calls and says, “yesterday they were doing so much better! and now she’s back to sleeping all the time, no longer eating or talking to us. What happened?” and then I have to explain this weird cruel thing that happens towards the end and that it’s normal. But is it cruel? I’ve read stories of people getting their last goodbyes in, enjoying these few moments when the patient is once again conscious and interactive. I prefer to think of them as bonus moments. They really are.

During the time that I was a visit nurse, I did a fair amount of death visits. That’s when the family would call and say the patient had died, then I was to go out and confirm – that is, listen to heart and lungs and confirm that the person had in fact died.

We then helped clean the body and call the mortuary for pick up. There were the usual pick ups for a traditional funeral. There were lots of pick ups for an organization that provides cremation services. There were even a couple of people that donated their bodies to science – one had a rare condition that he and the family wanted studied further after his death and one or two others were for general donation.

No one (that I visited) requested any “green burials.” I was a pretty big fan of Six Feet Under when it was on HBO (and still am – I consider the last several minutes of the series finale the best thing TV has ever aired) and they portrayed these green burials a couple of times toward the end of the series. I am very interested in learning more about these types of burials so you can certainly expect a post or two about them in the future.

In my relatively short time doing death visits, one visit stands out from all the rest. I arrived in the late evening to the patient’s home. It was very unusual in that the only person there was the patient’s husband. No other family at all. My previous experience had been with patients who were surrounded by family members – either at the time they died, or certainly by the time I arrived to confirm. But this time it was just one person, just him. Since I didn’t have any other calls at the time I spent some time talking to him about his wife.

At one point he said, “Here, let me show you something” and turned on the light for the backyard. I was a bit startled to see a casket out there – a plain pine casket. No shiny polished dark wood trimmed with brass fittings. Just a casket-shaped box. Then he told me they’d already had a little mini-funeral for her while she was alive! Everyone had written something and signed the box. The plan was to cremate her in it, surrounded by loving words.

I guess I (and you?) might be wondering if maybe this blog is going to turn into all-death-all-the-time. Well, that’s entirely possible. Death rather fascinates me and it always has. I have no idea (well, ok, I do) why I waited so long to get into hospice.

As I wanted to write in January, but WordPress not only wouldn’t publish my post, but ended up eating it too:

I started out in hospice as a visit nurse. That means I was at home and waited for the triage nurse (who fields calls from patients/families/caregivers) to call me with information about going out to visit a patient for a problem. Patients can be at home, in SNF’s, RCFE‘s, assisted living, etc. I would be sent out for any number of situations including starting IV medications, changing med cassettes, admitting patients, managing symptoms and of course confirming deaths.

During this time, I also trained to be a triage nurse. I’d make the looooooooong commute up the stairs and watch an inbox. When calls come in, we mark them and then call the patient or family to help with whatever problem they are having. We give advice based on the patient’s care plan and orders. If we are unable to give advice over the phone about a situation, we send out a visit nurse to assess the pt and help out.

That’s more or less it in a nutshell.

As time went on, I decided I liked triage better. Not being woken at 3am out of a sound sleep was a key component in this decision. When I did sleep that is… sleeping while on call is not very good sleep! I ended up quitting visit nursing and focused on triage nursing instead.

So that’s what I’ve been doing for the past 1 1/2 years. As I said in the post before, I definitely have some things to write about my job, especially now that I’ve been doing it for awhile and feel pretty confident.

So, it appears that my last post with any sort of substance whatsoever was on May 14, 2013.

Then I got bored and didn’t want to write anymore. But neither did I want to say “I’m done.” So I took a break.

In January of this year, I decided to take it all up again, but when I wrote that post and tried to hit “Publish” … nope. Error. After much discussion and rediscussion with 1and1.com’s customer service, it was decided that I was over my database limit. I had a whopping 149MB of data and they suggested that I delete some posts. After yet more discussion, it was finally determined that I could actually go to a 1GB database, but no, they were not going to help me do that.

And frankly, it all looked just too damn complicated for me to figure out. I am somewhat experienced with this stuff, but not really proficient and furthermore I don’t even like it. So it was too daunting for me to puzzle out and I gave up for a few months.

Last night my wonderful husband finally sat down and worked some internet magic and got it all up and running again. So here I am. Hi! Thank you wonderful husband!

I went through my blogroll and weeded out links that no longer worked, changed some others and removed blogs that weren’t being updated anymore. Although some I left in for nostalgia’s sake. :) I could certainly add more, but making buttons is time-consuming. And does anyone actually have a blogroll anymore anyway? I can’t bring myself to delete mine.

So that’s all for now. More later. (Famous last words, eh? No really, I have things to say!)

I’m sure most of us were riveted to our TV’s, radios, and computers on April 19th when the citizens of Boston and surrounding areas were advised to stay home and lock their doors. Mass transit and normally busy intersections were empty. Schools were not in session. Businesses were closed.

Working with hospice and needing to send out nurses on a regular basis to help patients who are dying at home, I naturally wondered how Boston area hospices coped with having to stay away from their patients.

Our hospice patients call us for many different reasons; even if they don’t call us, some require daily visits. Some need to have pump cassettes changed, dressings changed, or symptoms re-assessed and managed every day. I’m sure Boston has had its fair share of weather-related issues, but those typically come with at least a day or so warning and arrangements can be made. The shutdown that happened in April came with no warning whatsoever.

I was able to track down only a couple of Boston hospice nurses to chat with – they both said that their patients fortunately did not to require anything emergent that day. I know that almost every time I work, I take calls from people who need a visit from a nurse to help manage symptoms that have suddenly gotten out of control (shortness of breath, pain) or who have died and need to be pronounced. Catheters become dislodged, oxygen concentrators malfunction. I guess under the circumstances, non-urgent concerns were put off until the lockdown was over.

I know I was very surprised when I started working in hospice to learn that things that are an inconvenience to us (the President visiting the area or major protests, both of which can shut down major roads and highways for a period of time) can be a huge deal to patients who are at home. Hospice nurses have to figure out alternate routes (which can take much longer) or simply not visit at all in these cases. And it doesn’t only apply to hospice – home health patients can also require daily dressing changes, IV medications, and have equipment malfunction (wound vacs, anyone??).

I will leave you with a story that one of the nurses related to me. She was off from work that day, but wanted to share what her day was like. If there are any hospice or home care nurses that want to share stories of trying to help patients during natural disasters (or not-so-natural disasters), please email me at codeblogrn at gmail. Or use the “submit your story” link at the top.

Sarah Creed, RN writes:

I think that the day was so quiet because we were all glued to our televisions. I can’t recall another time where I have been more paralyzed by fear than last Friday. I live 2.5 miles from the house in Watertown where suspect #2 was found. Here is the story of my day:

I woke up to a text message from my boyfriend (who lives 2 miles from the “boat” and 1 mile from where the news was reporting from) asking if I was okay. After the rest of the week, I wasn’t sure what he was talking about, so I texted back saying yes, and of course went immediately to check CNN. I read that there had been a shoot-out in Cambridge and Watertown and that the suspect was on the loose. I called the DON of my hospice, as I am the nursing manager, and though I was supposed to be off, I wanted to help her call nurses. But at 7:30 in the morning she had already done that, and all was well. So I sat and watched. I was supposed to be packing, as my boyfriend and I are moving on Saturday. But I could not move. I sat and watched as the SWAT team entered homes so close to where I live. And then, the most terrifying thing happened – they stopped showing live news feed of the SWAT team entering homes.

We couldn’t drive anywhere, and even more than that we couldn’t walk anywhere, so my boyfriend and I were stuck apart. All I could hear was the wailing sirens of emergency vehicles. And then the whirl of a helicopter. Lots of helicopters. I looked out my window, and there were black hawk helicopters all around my building. And they were no longer showing live news feed, so I had no idea where they thought the suspect was. I was so afraid, because what if he was on my block? I know my building is safe. There are 2 locked doors to get into the lobby, and a lock and a deadbolt on my door. But still, it seemed these men were capable of just about anything. The day just continued like that.

We finally got the go ahead for people who had gotten out to work to come back home, so my boyfriend’s roommate picked me up on his way home, so that we could all be together. We just sat and watched the TV, waiting, with a very high sense of anxiety. The place was like a ghost town. My mom, who lives an hour north of the city said that no one was out by her either. I think that people just couldn’t walk away from the television. We wanted answers. One of my friends was friends with the MIT officer who was shot by the terrorists. Another one of my friends is friends with Jeff Bauman, who is now infamous as the man in the wheelchair being pushed by the man with the cowboy hat. He lost both of his legs. These are people that my people know and love. We wanted answers.

Then we hear that they didn’t find him, and that we can go outside. So we go and sit on the porch. And suddenly there are so many sirens, more than I had heard all day. My boyfriend tried to re-assure me that there had been a lot of sirens all day long, but I insisted that there were more. And then it came across my phone that there were shots being fired in Watertown. We were back to being glued to the TV. We found a link to the police scanner so we were able to hear what was actually happening. And then he was captured.

After awhile, we mustered up the courage to go outside and to the bar across the way. And the coolest thing, there were people cheering on the law enforcement personnel that were coming back to the station. Everyone at the bar was in a celebratory mood, and playing “American” songs on the jukebox. We survived. But, I have to tell you, it is still pretty traumatizing. One of my coworkers is having a pretty tough time – she was visited by the SWAT team that day and heard the shots. Forum, on Boylston St, where the second bomb went off, is one of our favorite restaurants. We are looking forward to going back there when it re-opens, but of course the innocence is gone. We had just been out on Boylston street on Saturday night before the bombing. We had been shopping in Watertown on Sunday. We feel violated. This is too close to our homes. But, we are strong, and we will move on and get through this. I can’t believe that the Boston One Fund has already raised over $28 million. We are so proud of that.

I know this is long – but this my story. It doesn’t pertain to hospice care. But this is how I know my hospice patients spent the day – glued in front of the TV, and very afraid.

I’ve encountered some interesting beliefs in my time as a hospice nurse. Before making visits or calls, we are expected to at least glance at a ‘basic information’ screen about the patient. I’ve always been intrigued when I come across an entry that says some variation of, “Do not mention the word hospice in front of patient (and/or) family.”

I can respect this. I’m more of a “let’s keep it real, yo” kind of person, but I know not everyone is. So I do my best not to mention the word ‘hospice’ while providing care for these patients, and it’s never been a problem.

But there are some patients that are SO opposed to the entire concept (although they still come on service) that they also refuse any kind of equipment that we offer them to make their lives easier while they are being taken care of at home.

Hospitals have it all, right there – over bed tables (which are nice because they have wheels and can be a tall, easy moveable surface for anything from meals to setting up supplies for a dressing change), bedside commodes (gotta pee, can’t walk, oh! there’s something we can put next to the bed! Genius!), and hospital beds. In fact, the fancy pants hospital beds we had at my job in CCU could translate phrases into like 15 different languages. We’d just pick one from a list (“are you in pain,” “please hold still,” etc.), choose the language, and the bed would speak the phrase you wanted. Needed to tell someone “I am your nurse” or ask them to wiggle their toes in Mandarin? The bed would do that. It would have been a really helpful feature, but patients often could not hear what the bed was saying.

Anyway, hospital beds, even those that can’t speak 15 languages, are pretty nice things to have when you’re sick. So part of me was always dismayed when I’d go to a house to see a patient in distress only to find that they were still on the couch or in a regular bed. Look, I get it. Having a hospital bed in your house takes up a lot of room. It basically screams, “Hi! I’m sick and/or dying!” So for someone who can’t even tolerate hearing the word “hospice,” having such a huge reminder in the room can be distressing.

But when the chips are down and you can’t breathe and you don’t have the strength to sit up? That bed can be a godsend. The head can be raised or lowered, the bed itself can be raised so that your loved ones (and visiting nurse! ahem) don’t break their backs bending over to provide care (turning, cleaning, boosting). The ability to raise the bed is actually pretty important for laypeople who aren’t used to using proper body mechanics when moving patients. The bed rails can be really useful to use to help get yourself out of bed.

So when I come visit because the patient is having a hard time breathing, and I walk in to see them laying flat on a regular bed, I’m sad that their denial has progressed to causing them actual discomfort. There’s nothing more I’d love to do than push a button and raise the head of the bed so they can breathe more easily. There are wedges you can use on regular bed mattresses, and of course there are pillows you can jam behind the patient’s back, but those aren’t always very comfortable and it’s hard to get them in the right position. Not to mention having to try to get them all back in position every time the patient needs to change position or get out of bed.

So if you find yourself or a loved one needing to be taken care of at home, and your nurse brings up maybe getting a hospital bed, don’t dismiss it immediately. It can be a real asset for a sick person’s comfort and that of those taking care of them.

I’ve been doing hospice now for over 6 months. As I did in CCU, I only work weekends and some holidays, so 6 months for someone like me doesn’t really equal 6 months for someone who does this full time. I still struggle with remembering everything I need to remember, but I’m getting better. There is more to remember than you’d think!

I’m realizing how much I depended on constantly being around other nurses to learn. My hospice orientation included some different scenarios where I was able to watch my preceptor deal with what was happening, and I learned from that. But it was still only the tip of the iceberg compared to what can really happen.

In the hospital, you’re usually surrounded by other nurses. You’re at the desk with them talking about patient care, you’re at the bedside helping with patient care, you have several around at any given time to bounce problems off of and get advice. I learned how to teach patients by watching other nurses teach patients. I learned how best to say things (and how not to say things!) by watching other nurses talk to patients. I learned how to titrate medications by watching other nurses. You get the point. Throughout my entire career, I was constantly watching other nurses so that I could be a better nurse.

Now I’m on my own. If I’m really in a pickle I can call another nurse who’s on for advice, and I have done that once or twice with a good result. But when you just can’t get that foley in, there is no one else to ask to try. You just have to leave it out and hope someone on days can come do it, which can be 16 hours later.

I went to a house late one night to help symptom manage a patient that was having pain. When I arrived, the patient was asleep but had to be woken up for some medications. Despite having severe pain all day, apparently the pain was gone when she awoke. But the patient was delusional. Although she had no dementia, she didn’t recognize her husband of almost 20 years. She kept asking about a cat that she needed to take care of, but the couple had no pets. She was very very concerned about this cat. Although she was not belligerent (as some confused people can be) and didn’t seem overly agitated about not recognizing anyone in the house with her, she was very insistent that we find this cat and make sure it was okay.

The husband and I did the best we could to reorient her, and she would look at us thoughtfully and then you could just see her mind reject what we were saying outright. But again, there was no agitation, no real distress involved. It was as if one part of her mind had no idea what was going on, but somewhere in there she knew she was safe regardless. The husband kept asking me what we should do about this, but I had no real ideas. We were already reorienting her, she wasn’t distressed, everyone was calm. I asked him a few more questions (has she done this before, has she recently started any new medications, etc.) and could determine no cause for her behavior. So I just said, “We’re already doing what we should be doing.” I just wanted to give her a little more time after waking up to clear her head.

She asked her husband for some ID, he produced his license, and she questioned him further. Finally it was decided that we would call her sister and talk to her about the cat and what was going on. The husband dialed the number and brought the sister up to speed on what was happening, and I heard him say, “I think she’s having a psychotic break and the hospice nurse doesn’t know what to do about it!”

I wasn’t too offended by that statement and decided that from his point of view, I really hadn’t provided much in the way of advice. To me, she was a patient who was disoriented and having delusions, and I’ve seen hundreds of patients in that state. What did I do in those cases? I medicated them. Because usually they were agitated, pulling at things, obviously distressed. This patient was not. I just didn’t feel the need to call the MD right at that moment. Even if the MD would have ordered something (Haldol I assume), it’s not like I could go to a med station and get it. We’d have to figure out where the nearest 24 hour pharmacy was and have someone pick it up. And if the patient had been even the tiniest bit distressed, I would have been all for that plan.

The sister decided to come over, the patient recognized her immediately and eventually become more reoriented. She still wasn’t sure about the guy sitting at the table with us, but took her sister’s word that she did indeed know him very well. She still asked about the cat, but her sister assured her that there was no cat. I believe her behavior may have been caused by disease progression, but who knows. By the time I left, she was fairly reoriented, in no pain, in no distress.

But the “she doesn’t know what to do” comment has really stuck in my head. People always say that CCU nurses have “autonomy.” And they do. But you really don’t know what autonomy feels like until you’re the only medical person there and everyone is looking at you for answers.

The following was originally written back in April 2005. I’d been traveling for about a year at this time. Working in McAllen, TX. McAllen was a mixed contract for me. I had some minor difficulties on the job with a co-worker but met some wonderful and lasting friends while there. There are so many experiences that I attribute to having worked as a Travel Nurse. Things that I don’t know if I would have ever seen or done if I had remained a staff nurse in my hometown.

The Hidden Danger of Candied Pecans

Yep…candied pecans! Made fresh on the street in a boiling pot of oil, sweet, hot and so very innocent looking. Very yummy and you know my love for sweets! I couldn’t pass them up. However….as wonderful as they are, I will never eat them again. I picked up a small bag of these delectable yet dangerous goodies in Progresso, Mexico today and saved them for an evening snack. Upon crunching on my first bite….yes, my FIRST bite…I chipped a tooth!! Guess I need to go back to Mexico and see the dentist next time. So, no more candied pecans for me! Guess I should have passed them up this time as the waistline doesn’t need them anyway! Maybe someone is trying to tell me something?

My new Travel Nurse friends; Theresa, Ed and Paul joined up with me for a day-trip to Progresso Mexico. We drove to Progresso today and had a great time. We stopped in a little cafe and had breakfast while listening to a Mariachi band, then we wandered the streets and attempted to make a few deals with the street vendors. All over town, you can hear the hawkers calling out “almost free” as they attempt to sell whatever trinket they have for sale. I picked up some sort of noise maker/toy for my daughter for “almost free!” She will love them but I’m sure that her Dad will want to kill me for sending them.

After shopping all morning we landed at a local place named Poncho’s for beer and margaritas. Live music today included some really BAD country singer!! We were more than happy when the Mariachi band wandered into the bar and gave a slight reprieve from the bad karaoke type country music! After a couple of drinks, we wandered down the street for some fresh taquitos from one of the street stands. One of my favorite things when visiting a new place is to savor the food. The street vendor didn’t disappoint. Final stop included the liquor store as everyone knows that no trip to Mexico is complete without cheap alcohol…and of course noisemakers touted ‘almost free’.

It makes me sad that the safety along the Mexico border has changed so very much since I was there in 2005. I don’t know if it’s even feasible to drive across the border anymore.

I recently spent some time in the south-central area of Mexico and felt perfectly safe there. I just don’t know if I would cross over from the US at this time. If you do happen to make it to Progresso…stop in at Poncho’s for a cheap (yet tasty) Margaretta and find your own trinket “Almost FREE!!”, but be sure to stray away from the candied pecans…they really are dangerous.

I’d love to get more stories from travel nurses! If you’re a travel nurse and have some good stories, use the “submit your story/contact” link at the top to send ‘em my way! Happy New Year everyone!

Archives

I Love to Play

Author

I am Gina. I have been a nurse for 15 years, first in med/surg, then CVICU, inpatient dialysis, CCU and now hospice. This blog is about my experiences as a nurse, and the experiences of others in the healthcare system - patients, nurses, doctors, paramedics. We all have stories!